Journal

PMG Conference 2019

The International Centre, Telford
15th - 17th July 2019

Wheelchairs and Volcanoes

Stephen Kebbell

Occupational Therapist

24 May 2018

Guatemala, the small country to the south of Mexico and about the size of Ireland, is a vibrant country full of history and diverse cultures. It is ancestral home to the Mayan peoples who, pre-conquest, built elaborate cities and pyramids through the jungles. Their descendants now form 23 indigenous Mayan groups such as Mam, Ixil, Quiche, Kek'chi and Kaq'chikel, each with their own language, religious beliefs and cultural heritage.

It is a land of contrasts. To the east, the laid-back lifestyle of the Garifuna descendants of slaves on the golden coast of the Caribbean; and to the west a harsher coastline with black volcanic sands and the frequent eruptions of Volcan de Fuego. To the north, the thick dense rainforests of the Peten and the Cuchamantane mountains; and to the south, the arid plains of Zacapa. The population is a mix of Mayan and “Ladinos” of European descent yet, like many other post-colonial states, cultural divisions and power are still very evident. Power and wealth are predominantly in the hands of Latinos.

Poverty and disability are rife. Ten to 14% of the general population are disabled (higher in rural areas); over 30% of households have a disabled family member; and nearly 25% of the over 50s have a disability. The United States Central Intelligence Agency (CIA) notes that “poverty among indigenous groups, which make up more than 40% of the population, averages 79%, with 40% of the indigenous population living in extreme poverty”. (CIA 2014). I guess the CIA would know. They started the war.

In 1954 the CIA invaded Guatemala and staged a successful coup d’état in the cause of bananas (COHA 2010) that started 36 years of civil war and a series of puppet or military governments; hence the term “Banana Republic”. Anecdotally, two men in Guatemala at the time were so incensed by what was happening that they fled to Mexico, found some allies and got onto a boat to Cuba. Their names were Fidel Castro and Ernesto Che Guevara.

This period saw a succession of coup d’états and military governments that were particularly brutal during the 1980s, destroying entire communities. Between 140,000 and 200,000 people were killed or disappeared (CDI 1998). In 1996 the wars came to an end with the Peace Accords. Poverty breeds disability, but war breeds both.

It was here, in 1997, in the small, remote town of Nebaj, cultural capital to the Ixil Mayan people, that I found myself living; my partner stationed by the peace keeping United Nations Verification Mission in Guatemala (MINUGUA). Nebaj lies 10 hours to the north by local buses (affectionately known as chicken buses) and in 1997 the road was only paved half way. The town is nestled in a valley within a mountain range, and has been geographically separated from the rest of Guatemala for most of its history.

The Ixil people follow a lifestyle and community little changed for hundreds of years. The women weave intricate huipil blouses, always worn with a crimson dress and a thick rainbow ribbon braided into their hair to form a ring on their heads. The men farm maize and beans from their small-holdings scattered through the eastern Cuchamantane mountains, taking their produce to the market in town. Maize is everything, forming their staple crop to make tortilla. It even has its own deity. But it was the Ixil region that saw most of the brutality of the war, having been caught in the middle of opposing sides of the conflict between left-wing guerilla forces and military governments with an agenda of genocide.

It quickly became apparent that there was an unmet need for those living with disabilities here. One or two had a wheelchair donated by their local church, but these were invariably built for much larger Westerners and didn't fit. I travelled around the communities and witnessed real horror stories - some bedridden with the worst contractures I've ever seen. It was during this time that I met Jeremias. He was 23 and living in a village called Palop. It was as far as any vehicle could reach and on the side of a mountain. His family had fled to Palop from the Ixcan region to escape the war that eventually followed them. He was 8 years old at the time and then he contracted polio. Although his posture was fixed from side-sitting on the ground, he could still drag himself about and through town, sometimes being carried. He attended school, and his family strove to provide for him. In such cultures, everybody needs to be working for the survival of the family unit. A disabled family member is often smothered with love and overprotection. His father Julian thought Jeremias would never be able to provide for himself or marry.

So, in league with a local association of disabled people and armed with the books I could find at the time - Where There Is No Doctor, Disabled Village Children, and Nothing About UsWithout Us by Dr David Werner - as well as a visit to a project in Mexico called PROJIMO, I set about securing funding from the Department for International Development to start our own wheelchair manufacturing workshop. The aim was to provide locally built and, equally importantly, serviceable wheelchairs. Being built by disabled people, it was to provide a source of work, skills and improved public profile and awareness of disabilities and rights.

My time in PROJIMO had been enlightening. There, in the last cowboy town in the desert before the Sinaloan badlands, was a rehabilitation community in the village of Ajoya (population 150). A village where you look down the main street and see many many wheelchair users trying to keep out of the sun and dust. But here, there were workshops building wheelchairs and prosthetics; a physiotherapy garden for children; pressure ulcers being treated with honey; self-propelled gurneys. Wheelchair users taking care of each other's needs right down to personal hygiene, and each with a story to tell of life in Mexico: Mario, the carpenter who also built coffins for the village who had been shot four times by a drug gang; Alicia, 8, shot by a stray bullet from six huts away in her shanty home (cardboard walls are not bulletproof); Alejandro, 22, shot through the spine by a policeman at age 11 for asking him the time; Andres, the former policeman from Chihuahua who lost a game of Russian roulette. All their stories, and so many more, meeting here, where hope still prevailed. They had a purpose. I learned to build wheelchairs with them, and wanted to take this back to Guatemala with me. I wanted to take this same hope, starting with the wheelchairs.

And so, it was in a converted workshop with tools and materials bought, delivered and installed (no mean feat against geography) that I was baptised into wheelchair therapy, with a welding torch in hand and bending cold steel. I accompanied Jeremias to Mexico to learn to build the Whirlwind Africa from the master builder Gabriel Zepeda who, in turn, visited our workshop to continue with the training, as did Whirlwind Wheelchair International themselves. We also made a good ally with the Transitions Foundation that had started a workshop in the old colonial capital of Antigua.

Then life happened, and I returned to Denmark as my partner was pregnant. Moving to the UK in 2001, I focused on wheelchair therapy for many years, during which time we saw the wonders of Facebook and smartphones flourish and eventually they became available in Nebaj.

In 2015 I returned there with 15 years' experience behind me. The project in Nebaj had sadly come to an end, due to corruption. Jeremias now works selling mobile phone accessories and caps from his market stall, and has married. He is a known face within the community and continues to be active in local disability issues - he even secured office space in the council hall, though it's up a flight of stairs with no lift.

But my main aim was to visit Transitions on a busman's holiday, and I was welcomed back with open arms by the directors Alex, Hugo and John, jokingly referring to me as the prodigal therapist.

The Transitions Foundation was started by John and Alex whilst Alex was seriously ill in hospital. They resolved to start a charitable foundation and, with contributions from John's numerous sources in the USA and Alex's contacts, they started to provide customised wheelchairs and even prosthetics, which they continue to do today. They build modernised variants of the Whirlwind and other designs, one of which was a great example of why not to build a chair based on a design student's concept! When I was there, they were also building basketball chairs for the Nicaraguan team.

It quickly became apparent that, although these guys were brilliant engineers, their clinical knowledge was rather poor and, most alarmingly, they had no effective pressure relief cushions other than used and donated ones.

In 2016, I spent a further two weeks at Transitions. With a training package in hand I was able to help them develop cushions and backrests. The challenge here quickly turned out to be earning the respect of the workers. Wheelchair therapy perspectives needed some easing into, but Juan, the cushion maker, quickly took to the topic as did Rogellio. The cushions they had been making were waterproof canvas-covered 3'' slabs.

Foam was easy to source but not visco-elastic grade. When this was found, it was considerably pricier. The cushion covers had no stretch, and lycra was expensive. We found excellent possibility and immersion with one inch castellations in the foam and covered with a lycra top; the cheaper canvas being used for the bottom and sides. Platillon was also not available anywhere closer than the USA, so the only solution was a basic thin plastic bag under the cover with a regime of drying and aeration.

We also got creative and found that by altering the depths of the cuts, we could help address pelvic obliquity issues. By only castellating the rear half, we could provide better thigh support and a firmer transfer surface. In doing so I was able to teach Juan about the pelvis, its movements, sitting surfaces, pressure areas and pressure relief which was a major aim. I am happy to say that Transitions is now able to provide affordable and effective pressure relief and, so far, the feedback has been very good from users.

Alex also speaks at the UN now, and you can read an interview with him here.

My life in Guatemala taught me many things relevant to practice here in the UK. Living day-to-day alongside wheelchair users with various needs in a less resourced country hones one's ability to appreciate the very basic difficulties that poor equipment creates, some of which can be life-threatening. I have seen what happens in the extreme when people don't have the right equipment or any equipment at all - friends and young people with spinal cord injuries dying for want of pressure relief. It showed me the fate that awaits all if we didn't do what we do in clinic.

It taught me how people can adapt in extremes. It showed me why a man with horrific ulcers would sit in a wheelchair with no cushion and the canvass sagging to the cross-brace. It's the same reason as a drowning man will clutch at a straw: his life depends on it, and is the lesser of two evils for him. It taught me to understand why my clients in clinic won't use their lovely padded 2-point belt, or decide to forego footplates, sometimes through lack of knowledge, but sometimes because they have no option in their life or home. It taught me to understand why a client with MS insisted on having her wheelchair adapted to allow for her handbag to be next to her. Reasons can be very subtle, as can the solutions.

For all the science we are able to apply to wheelchairs and seating, people will do their own thing as their environment, circumstance and life dictate. Wheelchair therapy is as much an art as it is a science - there are simply far too many co-dependent variables. We can't stop or drag people along the road of a directed life; however, as in the case of Jeremias, we can help them steer and navigate their life-journey, fill in a few pot-holes, build a few bypasses, and give them the wheels to do it with.